Give me a break

As we inch toward the five week mark in the hospital, this hospital stay is feeling interminable. I'm not saying doctors aren't self-important and night nurses aren't really loud, but I can also see that I am losing my essential hospital zen, which makes everything less tolerable. I handed off to Aaron and came home tonight for a special two-night break. I have felt reluctant to spend two nights away from Samson, but I need the break and I will return to battle on Sunday a better, or at least nicer, mother of the patient.

I am sure the hospital is happy to have a break from me as well. Aaron is mostly the good cop to my bad. As expected, Dr. Nemecek came scurrying down on Thursday after she got word I had gone rogue and was going to have the kids visit. It was in the afternoon, when Aaron was there, so she got it easy because I was pretty revved up to lay into her. Aaron said he told her we were disappointed in her handling of the issue, but he also listened to her spiel, which he found pretty convincing.

Aaron said Dr. Nemecek actually teared up talking about a family where the transplanted child, days away from discharge from the hospital, got an infection from a sibling and died. She said that this experience, and evidence that infection protection increases exponentially after reaching a sustained 500 ANC (absolute neutrophil count), informed her decisions about isolating Samson. Dr. Nemecek was apologetic about her poor communication -- she agreed that she had awkwardly dumbed it down for us, causing the confusion -- but she urged us to bear with her and keep the kids away until we have the two days of 500 ANC. She also said she was very surprised that Samson was shaping up to discharge so soon -- she had expected him to be having troubles and needing hospitalization well past the 500 ANC mark, so really she had intended a period where the children might have visited in the hospital.

So, for now, I am going to continue to hold off on visitors as Dr. Nemecek recommends.

And I am hopeful our stay won't be too much longer. When we entered the hospital, I thought it possible, even likely, that we would spend most of the first 100 days in the hospital, so to get out closer to six week would be fantastic.

Yesterday, escape was within my sights with a jump to 384 ANC. Today we were back down to 175, with a lowered total white count as well. But we could go back up tomorrow, and as long as no other complications present, we can continue Samson's treatment out-patient with just two days of a 500 ANC. Prayers please. I want to bring my baby home.

When he does come home, Samson will have a daunting list of medications, and at this point he is still dependent on intravenous nutrition and fluids. He will spend a lot of time at the hospital each week for blood tests and transfusions, and be banned from places like schools, stores, and restaurants, but he will sleep at home, enjoy his siblings, and breathe fresh air.

While I wish we had not spent any of the past year at home with oxygen tanks, feeding tubes, IV medications, and monitors, the fact is that we have, and because of that experience I feel pretty confident about bringing Samson home with a lot of baggage. With a couple extra hands and maybe a chart, we can do this.

In many ways, Samson seems healthier than he has ever been. Today he spent a good amount of time actually whooping with laughter, not really a normal Samson pastime. I think he is giddy with his emerging good health. Truly, this is the longest he has ever gone without a major respiratory illness, and the ease with which he can breathe is showing itself -- in laughter and nonstop blah-blah-blahing -- and in the fact that he is branching out, expending extra energy on the non-essentials: trying to sit, put weight on his legs, and play with his toys. I am excited to see what Samson can do developmentally now that he does not have to give his all just to breathing and eating and surviving chemotherapy. He is a year old now -- there are so many fun things for him to experience.

It felt great to come home tonight, just in time to tuck the children in bed. My kids are so beautiful and funny. Harriet asked me tonight if I speak math, like Daddy. Cash, as I helped brush his teeth, smiled and told me, I'm so patient with you. Josephine, my kind big girl, has another loose tooth. When I sat on the side of the tub as they did their bathroom stuff, she came over and rubbed my shoulders, like she has seen Aaron do. I'm counting the minutes until Samson can come home and get as much love and healing from them as I do.